Together We Can Change Lives

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Give to Make an impact in the ostomy community

 

Your support makes a difference in so many lives. People often turn to UOAA in times of concern and uncertainty. UOAA’s staff and volunteers provide assistance every day to people across the country who are seeking knowledge, resources and support as they navigate their way through living with an ostomy. Your donation to our mid-year campaign will ensure UOAA will continue to be a trusted resource for caregivers, family members and medical professionals. Please help us reach our fundraising goal of $110,000 this year.

“Thank you for all your support. Probably without my local support group and UOAA, I seriously doubt I would have been aware of a WOC nurse or a method to receive the medical treatment I thought was necessary. Now…I will be able to live a healthier, productive life.” J. R.

General Fund

Support UOAA as we continue to create and share our educational materials, connect people to affiliated support groups, maintain our informative website and engage with medical professionals who care for the ostomy community.

“I appreciate the support of UOAA. We use the website in the clinic as our major resource and the booklets are great for the staff in-services. I have given copies to the medical students when I give the ostomy lecture during their trauma rotation as well…” C. C.

Advocacy Fund 

Your financial contribution will help engage UOAA and its Advocacy Network (over 650 supporters) in legislative advocacy efforts.

“Just want to tell you what a wonderful advocacy tool you have provided to ostomates and affiliated support groups around the country…I can appreciate how the product of your work will encourage individuals and groups to move ahead with advocacy.” P. M.

Ostomy Awareness Fund 

Assist UOAA in dispelling the fear of undergoing this life-saving and life-restoring surgery. Attendees of our biennial conference (join us August 6-10, 2019 in Philadelphia) have the opportunity to learn from top medical professionals, network with fellow ostomates and share their life experiences.

“Keep up the good work! I have had an ileostomy since 2002…I am retired and now perform at festivals and enjoy life! Life begins at whatever age you shake off your fears and decide to fulfill your reason for being!” K. T. H.

With your donation we can empower people living with an ostomy or continent diversion, promote quality of life, and continue our work to erase the myths and stigma surrounding this life-saving surgery. Together we can change lives.

Sincerely,

Susan Burns
UOAA President

Click here to donate today or learn more. United Ostomy Associations of America, Inc. (UOAA) is a 501(c)(3) charitable organization and all donations are tax deductible.  UOAA has a GuideStar Gold Seal of Transparency.

Fun In The Sun, Ostomy Style

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Feeling comfortable and fashionable by the water this swim season

By Ellyn Mantell

Living on the East Coast means sand and sun as soon as the calendar pages turn to May, and most have great difficulty saying farewell to the ocean each fall. The smells of delicious boardwalk foods, carnival-style rides, miniature golf and people-watching on the beach fill the days and nights of the summer months. It seems, for all of us, there are not enough opportunities to enjoy our vacations or weekends, and ostomates certainly do not want our particular issues to slow us down!

The first summer after my ileostomy presented a bathing suit challenge, and my creative energy began to flow. Since I love whimsy, I bought a black and white polka dot swimsuit bottom from an ostomy clothing company, which has a place for my pouch, and a soft drape to the fabric. I paired it with a vibrant red tankini, which I bought at a bathing suit store in the local mall. For those unfamiliar with tankinis, I am happy to extol praises on their wearability for all women – they are simply tops for a two-piece suit, but unlike a bikini top, which exposes the abdomen, tankinis cover the entire abdomen and are exceptionally flattering. Incidentally, this 2-piece approach works very well for those of us with a smaller upper body, or vice versa. I loved wearing my attractive ensemble, my pouch was hidden, and my self-esteem was certainly not deflated!

In addition to the 2-piece approach, many women enjoy wearing a sundress, since, like the ease of a “little black dress,” the fit is extremely flattering and there is no concern about pulling together disparate pieces. Most women have a preference about the type of bathing suits they want to wear, and our ostomies do not preclude us from our choices, particularly for those who wish to actively swim or dive. There are even high-neck active swim lap suits for serious swimmers.

Coverups have always been a staple for women, and they are ever more important to some ostomates. A flowy chiffon or traditional linen coverup provides a vertical line for the eye, and since color is always attractive, prints, brights, black and white all call attention upward, making the legs look longer and thinner.

Men can now find specialty ostomy swimwear online and know their pouches are safely protected while swimming or diving, as well. Some prefer to wear under their suits products such as a swimwear coverup or ostomy support wrap, made with lightweight water-resistant material to provide structured support, while compressing the pouch against the body. If there is real concern about the efficacy of their pouching system, some men and women prefer to use a waterproof ostomy cover. And speaking of coverups, men may consider swim shirts, sweatshirts or t-shirts to cover themselves.

No article on bathing or swimsuits would be complete without a conversation about sun protection clothing. This category of swimwear is growing exponentially each year, since the sun is stronger than ever, and our knowledge of the need to be proactive in protecting ourselves is better understood. If you look online you will find UV, sun-retardant and even chlorine resistant swimwear.

Now throw a good book or The Phoenix Magazine in your tote bag, add a huge hat or baseball cap, fabulous sunglasses, throw in SPF 50 Sunscreen, some ostomate-friendly nibbles and lots of cool water. Enjoy the day, summer never lasts long enough!

 

Ellyn Mantell blogs at morethanmyostomy.com and is a UOAA advocate and support group leader from New Jersey. 

Singer’s Ostomy Past Leads Him to Partner with UOAA

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Grammy award-winning recording artist speaks out for ostomy awareness and support

The emotions all came flowing back. While touring at a radio station earlier this year in Louisville, Kentucky recording artist Damon Little heard of the tragic suicide of a 10-year-old boy Seven Bridges. There was a part of his own story that he had just recently felt compelled to reveal for the first time ­– he too had lived with a colostomy as Seven once did.

Grammy-winning recording artist Damon Little had an ostomy as a child and is now part of an outreach effort with UOAA to promote ostomy education and awareness.

“This boy’s story was my story. The feelings of isolation and pain of endless surgeries” says Little who had an ostomy for most of his youth until a reversal at age thirteen. Though many young ostomates are now encouraged to be active his teachers and parents at the time sheltered him from sports and other children, because of his ostomy.

Earlier in the year while working on a new inspirational song “Be Alright,” he could not shake the feeling that something was missing. Still unaware about Seven’s death he was inspired to record a testimony about his past on the track. It felt like it was a natural fit for the song’s powerful message.

After learning of Seven’s death the song seemed like fate and Little also wanted to do more to help people living with an ostomy. He and his wife reached out to  United Ostomy Associations of America (UOAA) to see what could be done to help the next person in need.

Ostomy Outreach

UOAA is now working with Little to spread the news of our 300 affiliated support groups, national advocacy program, and free educational resources available to all those seeking ostomy information and support. He is speaking out live on radio interviews and on stage at events around the country. His story is already touching people and compelling them to do more.

At an appearance in Elizabeth City, North Carolina a hospital caseworker asked for UOAA brochures to share with patients and a man living with an ostomy who was at the gathering bravely spoke out about his story and in support of UOAA’s mission.

Though he is best known for his Gospel music, Little has also agreed to record a non-denominational uplifting version of his song “Be Alright.” We hope this speaks to all those who may be struggling with their ostomy or other issues regardless of their background. Look for that to be released in a few weeks with a special shout-out to UOAA.

A Famous Musical Family

Little, a native of Baltimore, got started singing when he was just five-year-old with his family group consisting of his brothers and cousins. His first recording was with his uncle the legendary Clarence Fountain of The Blind Boys of Alabama. The Blind Boys of Alabama have been celebrated around the world and played for three U.S. Presidents.

In his own music career Little has spent weeks on the top 10 gospel charts and top 30 on urban AC billboard. He has traveled with numerous national and international tours performing for audiences as large as 300,000 people.

Little’s sound has been compared to the legendary Al Green and the late Philippe Wynne, the Spinners former lead singer.

Fighting Stigmas

Little has found that the volunteers of UOAA and many in the ostomy community are equally shaken by the suicide of young Seven and want to do much more to help end existing ostomy stigmas.

By joining forces with UOAA Little wants the public to know that ostomy or continent diversion surgery can occur at any age, and that often the emotional scars take the longest to heal. “Most people with an ostomy who connect to the support and education they need live full, active, and healthy lives,” says UOAA President Susan Burns, a longtime ostomate. “Many people don’t realize that with some help they can swim, play sports, work, be intimate, and fully embrace a second lease on life.”

Little is partnering with UOAA to reach out to communities everywhere, particularly underserved populations to dispel ostomy stigmas and connect people in need with support and educational resources. He’ll also serve as UOAA’s Ostomy Awareness Day Champion on October 5, 2019. Events include the Run for Resilience Ostomy 5k that will raise awareness in nine U.S. cities.

Most importantly, Damon Little wants you to know it will “Be Alright” and to embrace the life ostomy surgery has allowed you to have.

Connect with Damon Little:

Facebook @IamDamonLittle

Twitter: @IamDamonLittle

Instagram: @IamDamonLittle

Youtube: Damon Little Music

Liz Hiles’ Story

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I  had been increasingly struggling with symptoms for over two years with medical personnel brushing me off because I did not fit the norms for bladder cancer and didn’t check off enough risk factors for it. By the time of diagnosis, at the age of forty, I was perpetually in pain and discomfort, I was periodically urinating blood clots and I was unable to sleep through the night due to the pain and frequent urination. I felt like I spent most of my time and energy running to the restroom. I even had one ED physician laugh at me and assume that I didn’t know my own body well enough to know whether I was urinating blood clots or having issues with my menstruation cycle.

I had my urostomy surgery on September 23, 2016 after receiving a bladder cancer diagnosis on August 12, 2016. I had Stage IV Bladder Cancer with a T4, muscle-invasive tumor.

Having my surgery has allowed me to get back to my own life and start living again…mostly without pain. I’m able to sleep through the night again and I do not spend most of my time running to the restroom.

I have been working in a pediatric GI office since 2012, so not only was I aware of ostomies and that a person could live a long, productive, great-quality life with an ostomy, I also had my very own personal ostomy support crew. My coworkers are amazing and have been so supportive through everything…several nurses have even given me ostomy/stoma care tips and helped me address potential concerns. One nurse, a true-blue friend, even helped me change my bag a couple of times when I first had my surgery and was in rehab!

Finding Support

During my chemo treatments, I first started looking at online resources and started reaching out. I remembered that my WOCN told me there was an active local ostomy support group. It wasn’t until November 2017 that I was physically able to make any meetings in person.

Encountering the Greater Cincinnati Ostomy Association GCOA was the best connection I could have made post-everything. I originally tried to connect with people through the American Cancer Society and the Cancer Support Community, but bladder cancer is sort of a red-headed stepchild of the cancer community. It affects many on a number of levels, but NO ONE talks about. Not everyone diagnosed with bladder cancer has to go through the extreme treatment measures I did, so there are varying experiences within the diagnosis. However, going to the local cancer-focused groups was very frustrating and discouraging for me as most of the people I met there were breast cancer survivors whose experiences did not have any similarities to my own. There were no local bladder cancer-specific groups in my area and there still are not.

When I finally connected with UOAA/GCOA, I found more understanding, empathy, compassion, and comradery in the first meeting than I had in several with the cancer organizations. People definitely made the difference. Online support was okay, but even there I was sometimes frustrated with the set up because it too easily turns into a forum for sharing memes and complaining about their situations. There’s not a lot of educational conversations or intellectual discussions about what I was experiencing, which was something I was craving.

Becoming Active Again

I am still experiencing neuropathy in my feet and ankles as a side effect of the chemo treatments that I will probably deal with for life and I am still working on getting my strength and energy back, but I am gradually reclaiming everything that I did before. I fell shortly after my last chemo treatment and spent about 3 weeks in the hospital/rehab before getting discharged on a Friday and returning to work the following Monday because I had exhausted all of my medical leave and it was either return to work or lose my job. I did not want to deal with the stress of job hunting after all I had been through and going on disability indefinitely was a luxury that I could not afford, so I returned to work completely bald and using a walker. The first day back, I could barely make it from the front door to my office chair. Still, returning to work was one of the best things for me because it forced me to have to rebuild my strength and be active.

I now work 40+ hours a week again with a team I love supporting and I volunteer with the GCOA and Hughes High School, my alma mater, as much as I can. I took over the presidency of the GCOA back in January. I still live alone on the 2nd floor of my quaint, inner-city, 2-bedroom apartment. I enjoy spending time with friends and extended family. Last May, I rented a car and went on a road trip by myself to Columbus, OH to participate in the BCAN Walk to End Bladder Cancer and catch up with some amazing people that I have in my life. I will be taking a plane and train trip in August to attend the UOAA National Conference and go on vacation in upstate New York afterward. I am finally able to start walking and being a bit more active again and have started trying to figure out how to do some of the higher energy things I used to do (like dancing and workout videos) despite the neuropathy, which sometimes makes it hard for me to coordinate my feet. It’s all a process though and I try to take it one day at a time. I’m hoping to be able to take a trip to Argentina in 2020…your attitude and determination are what makes the difference and I’m determined to accomplish things that I have always wanted to do despite the obstacles I’ve had in my past.

Raising Awareness

Both bladder cancer and urostomies are extremely rare and there are huge discrepancies in diagnosis and treatment of bladder cancer, especially with women and minorities. It has been really important to me to bring awareness to both issues because I truly believe that lives can not only be improved, but saved by advocating, educating and raising awareness of bladder cancer and ostomies. So many people immediately think that having your bladder or part of your colon is going to end life as they know it. In part, they are correct, but not in the way that most people think at first thought. People with ostomies can live long, productive lives and be amazing leaders in their communities…just like anyone else. Just because you will always have a medical condition that requires the use of medical equipment does not mean that your life is over. It is different, that’s all. We’re all different though, having an ostomy just makes you extra special.

When my urology oncology surgeon told me that he wanted to remove my bladder (along with various other abdominal parts), I didn’t hesitate at all and said, “Okay. So what’s next?” I knew that my life would be over if I didn’t get an ostomy and I knew that my life would not be over with an ostomy. It was one of the easiest medical decisions I have ever made. He could have asked me if I wanted a cup of coffee it was that easy. That doesn’t mean that I didn’t have struggles and the journey wasn’t a challenge because I did and it was, but I am grateful that I had a choice of life or death and that I was able to choose life so I could get on with mine. Raising awareness for bladder cancer and ostomy awareness means that I could help someone make that life-saving decision that much more quickly and that they would be able to move onto healing and gratitude that much more quickly, instead of being bitter, pissed and depressed over losing a non-essential piece of themselves.

I have raised money, made social media posts, written articles, blog, had discussions, and encouraged others to go outside of their comfort zone to seek support. Additionally, I fairly quickly began being more involved with my local ASG and am committed to thinking outside the box and expanding opportunities to reach people where they are at and, hopefully, encouraging to become/remain involved and to share their own stories.

Staying Positive

I’m alive! I’m not in constant pain and discomfort. I can sleep through the night and not be up every 10 minutes to go the bathroom. I don’t have to do that “gotta go” dance while standing in line for the ladies’ room. I can hook up to my Foley for long trips or binge-watching and not have to move for hours. My bladder does not interrupt me in the middle of the best scenes when I go to the theater. I’m able to concentrate again. I can relieve myself while standing up or writing my name in the snow (gotta see a little humor in the situation)!

My advice is to just focus on living your life. The closer you get to doing everything you did before, the more positive the picture of life with an ostomy becomes. Yes, you can live without those parts and you can still be an active person. Your life and your dreams are still unlimited…it just might take a little extra preparation and planning, depending on your personal diagnosis and situation, but real life and real dreams take hard work, no matter who you are! You have to work for the things in life that you want anyway…no matter who you are or what your circumstance is, but the harder you have to work for something, the more worthwhile, valuable and meaningful it is to you. Only you can make the decision on how meaningful you want your journey to be though.

Overcoming Challenges

Most of my challenges are from my cancer treatments and not from having an ostomy. Still, bending and twisting are sometimes challenges. I do have a hernia that I way too quickly achieved by sneezing and, although it does not typically bother me, it is something to keep in consideration when I am trying new movements or lifting heavier objects. I have neuropathy and slight hearing loss as side effects of my chemo treatments and those are more annoying and challenging than my ostomy issues. Every once in a while, I have a leak, but I generally carry at least a few supplies with me so I just try to catch it quickly, change and move on. I’m really fortunate to have amazing friends, family & coworkers who are really understanding and supportive when these things happen and they don’t bat an eye when I need to deal with these things. Overall, I’ve pretty much learned to have a new definition of “normal” and I take things day by day and slow down when I need to and, most of all, when new things come up, I TRY instead of just giving in.

Advice for those who may need ostomy surgery?

Don’t think twice! No, it isn’t always easy and it isn’t always an easy choice. Sometimes, it’s all very hard. Yes, life will be different, but, in the long run, it’ll be worth it and at least you will still have a life to live.  If you give the ostomy and yourself a chance, having an ostomy will ultimately give you a better quality of life. Also, don’t be afraid to reach out to others who have had similar experiences…that’s how you get through the challenging moments, days, and weeks. Also, I feel like it is critical to share your own story in some way, shape or form. Not only does it help others get through their situations, but it is a great way for you to heal and get through your own story. Sharing your story is a way of honoring yourself and allowing you to shed light on your own strength because many times you don’t realize just how strong you are. Martin Luther King, Jr said, “Our lives begin to end the day we become silent about things that matter.” Keeping your story bottled up inside and not even sharing it with the people you love is detrimental to your journey. You matter and so does your story, so share it.

Making a Difference

Last year, I hosted a virtual Run for Resilience Ostomy 5k walk locally and I had 6 humans and a canine share in a beautiful day at a local park. It was great to share my story with people who hadn’t heard about it before while walking. Prior to my own surgery, my team at work and I would wear blue and green on Ostomy Awareness Day in support of the patients and families we care for.

I have grown up participating in similar events and have always found them inspiring and empowering. This year, we hope to have even more participation and invite everyone to meet at a group meal afterward. I will be attending my first UOAA National Conference in August and I’m excited to make new connections and learn more information that will enable me to assist others in getting back into life after receiving an ostomy. I would like to see others get involved in these events because it gives them connections, information, support and empowerment. There is no substitute for making connections in real life with people who have tackled the same problems, fought similar battles, and, most of all, WON. There is strength in numbers and we are all stronger together.

Ostomy Support for Bladder Cancer Survivors

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Urostomy and Continent Diversion Patients Find Support and Education from Peers at UOAA.

By Ed Pfueller, UOAA

May is Bladder Cancer Awareness Month. According to the American Cancer Society, this year more than 80,000 people are expected to be diagnosed and approximately 17,000 will die as a result of this disease.

Bladder cancer survivors are a major part of the ostomy community represented by United Ostomy Associations of America (UOAA) through support groups, educational resources, and national advocacy.

For those with this cancer who require their bladder to be removed, a urostomy or continent diversion may be necessary. A urostomy is a surgically created opening in the abdominal wall through which urine passes. A urostomy may be performed when the bladder is either not functioning or has to be removed. There are several different types of surgeries, but the most common are ileal conduit and colonic conduit.

Be Prepared

Our new ostomy patient guide is available to all who need it and it is a great overview of what to expect. Our urostomy guide has even more in-depth information. If you have a medical question contact your doctor or nurse, in you have a quality of life question- UOAA likely has the answers.

If you or someone you know is in need lifesaving ostomy surgery remember-you are not alone. 725,000- 1 million people in the U.S. of all ages and backgrounds live with an ostomy. Connecting with UOAA resources is critical. Especially seek out one of our almost 300 UOAA Affiliated Ostomy Support Groups in the U.S. before, or shortly after, your surgery. Peer support and preparation can put you on the path to success in what will be a challenging time both emotionally, sexually and physically. Ask if the hospital has an ostomy nurse and insist on having your stoma placement marked before surgery. These and other self-advocacy tools are paramount and outlined in our Ostomy Patient Bill of Rights.

Other surgical options after bladder removal may not require an external pouching system such a continent pouch, or orthotopic neobladder. Continent diversion surgery needs lifestyle consultation and thought before being seriously considered since these surgeries are extensive and have possible complications including incontinence.

Read more in-depth here about continent urinary diversions such as an Indiana Pouch. This uses the creation of an intestinal reservoir with a catheterizable channel that is brought from the reservoir to the skin with the creation of a stoma. The Indiana pouch has become the predominant urinary diversion for patients who desire continence.

Another diversion is the Neobladder. The creation of a reservoir (neobladder) that is surgically connected to the urethra. It is created for those who do not want a stoma and wish to void per the urethra.

Before surgery, it is also best to learn some facts about living with an ostomy. After the healing period outlined by your surgeon you can swim, bathe, be intimate, travel, and embrace a new normal life. For more information read our Tips for a Succesful Recovery After Ostomy Surgery and use it as a roadmap for success.

Urostomy Tips

For help getting a good night’s sleep with a urostomy, night drainage systems are available to collect and store urine so can sleep without having to empty your bag multiple times during the night.

Unlike some people with gastrointestinal ostomies there are usually there are no dietary restrictions and foods can be enjoyed as before. It is suggested that 8-10 glasses of fluid per day be consumed to help decrease the chance of kidney infection. We also have information on how to retain an acid PH balance of your urine.

Sexual function is influenced by the reasons for which the urostomy is performed. The urostomy itself should not interfere with normal sexual activity or pregnancy. UOAA Affiliated Support Groups are available for individuals and partners seeking emotional support. Our Sexuality and Intimacy Guide may be helpful in facing any new challenges.

Connect with a Community

If you have not had the chance to connect with others with a urostomy, UOAA’s 7th National Conference is a unique opportunity. Urostomates will find camaraderie and education with others from around the country. A few of the urostomy specific sessions include a Basic Urostomy session with Dr. Edouard Trabulsi, MD, FACS and a urostomy meet and greet. There is also a “Ask the WOC Nurse – Urostomy” session with Marie Brown-Etris, RN, CWOCN and other general sessions to get your urostomy or continent diversion questions answered.

This Bladder Cancer Awareness month you can send us your photo and urostomy survival story on social media and we may share your patient story. You may also be interested to know that people also have a urostomy due to spinal cord injuries, malfunction such as chronic infection of the bladder and birth defects such as spina bifida.

Celebrate Bladder Cancer Awareness Month and connect with the Bladder Cancer Advocacy Network (BCAN) on all the ways to make an impact. You’re also invited to join with UOAA for Ostomy Awareness Day on October 5, 2019 or participate in one of our Run for Resilience Ostomy 5k events around the country. We hope you’ll consider a donation, joining our advocacy efforts, or taking part in a support group to give back to the next cancer survivor in need.

 

The Ins & Outs of Continent Diversions for the Bladder: What You Need to Know

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By UOAA Advocacy Committee Members:
Joanna Burgess-Stocks BSN, RN, CWOCN
Anita Prinz RN, MSN, CWOCN

Why does one have their bladder removed?

The most common reason for removal of the bladder (radical cystectomy) is due to bladder cancer. Less common reasons are due to gynecological cancers of the vagina and uterus and rectal cancers. These cancers may invade the bladder. Indications for bladder removal not related to cancer include bladder dysfunction due to a neurological impairment, radiation cystitis, interstitial cystitis or some kind of trauma that has occurred.

Whatever the reason for bladder removal, it takes consultation with a surgeon to determine the most effective bladder diversion and one that will result in the best quality of life. This article focuses on continent urinary diversion types.

To pouch or not to pouch?  

Patients facing radical cystectomy may be presented with several surgical options; urostomy (ileal conduit), a continent pouch, or orthotopic neobladder. Many candidates naturally want an option that does not require wearing an ostomy pouch. However, continent diversion surgery needs to be thoughtfully and seriously considered as these surgeries are extensive and have possible complications including incontinence.

Continent Urinary Diversion Types:

With a continent urinary diversion one has control over when the bladder is emptied versus a urostomy (ileal conduit) where one does not have control and urine output must be contained in a pouching system. Individuals with continent diversions will either catheterize a continent pouch several times a day or they will learn to urinate through the urethra. These surgeries are typically done at large teaching hospitals which for many, may be located quite a distance from where they live. This should be considered, as regular post-operative visits are necessary.   

The continent pouch is a surgical procedure in which a “reservoir” is created by opening up loops of bowel (small or large intestines) and sewing them back together to create an internal pouch or pseudo-bladder. This is now where urine is stored in the body. The urine is drained on a regular basis through a stoma (intestinal channel) located on the abdomen and connected to the reservoir. The stoma is continent (does not leak urine) because it is created with a valve already located in the body (the ileocecal valve) or a valve is created surgically. The valve is placed between the internal reservoir and the stoma. The valve stops urine from exiting the body until a catheter is inserted.  

These diversions do not require the use of an ostomy pouch but are managed with a stoma cover (foam dressing) or a piece of gauze for protection. Emptying the bladder is done by inserting a catheter into the stoma. Manual dexterity is a must for learning this technique. Catheters, water-soluble lubricant, and stoma covers will be your needed supplies. Catheters can be cleaned and reused.  Over the first year of surgery the capacity of the continent pouch will increase from 300 to 500 mls. Thus, the time between each catheterization will increase until a frequency of every 4-6 hours is achieved.

The Indiana, Modified Kock Pouch, Mitranoff, Miami and Mainz are types of surgical procedures to create a continent pouch. The choice of which one to use is based on the surgeon’s assessment of which one will be most appropriate for the individual. Want to know what it’s like having an Indiana Pouch? Watch this YouTube video.

Specific Considerations in choosing a continent pouch:

  • Frequent self-catheterization
  • Occasional irrigation to cleanse the pouch of mucous
  • Sufficient manual dexterity
  • Acceptance of the appearance of a stoma
  • Evaluation and preoperative stoma site marking by a WOC nurse is important in preparing for this surgery.

The orthotopic neobladder, a bladder substitute, is created from the small intestines much like the continent pouch. With this technique, a reservoir or pouch is created to hold urine which is then connected to the urethra to allow urination in the usual manner. The individual will sit to urinate and must learn to relax the urethral sphincter and bear down and/or press on their belly to empty all the urine.

It is recommended that neobladder candidates should have their pelvic floor muscles’ (PFM) strength, tone, and endurance evaluated prior to surgery. Learning how to do pelvic muscle exercises before surgery is helpful and will need to be continued after the catheter has been removed following surgery. Achieving continence will take consistent daily practice with timed toileting and strengthening the pelvic floor muscles.

People who undergo surgery for a neobladder must be aware of the potential for both daytime and nighttime incontinence and urinary retention.  However, this will improve but it may take up to one year. Current studies show vast ranges in complete continence after one year from 22-63%1.  Patients need to be educated regarding regular toileting and use of continence aids to manage this potential problem. Another consideration is that individuals will need to learn self-catheterization as periodic irrigation with a catheter will be required to remove mucous that can build up in the bladder and may be needed to help with urinary retention. When considering surgery for a neobladder, one must be open and honest with both self and the surgeon concerning your feelings of caring for a neobladder and the potential problems of incontinence and urinary retention.

Additional neobladder facts are here.

Specific Considerations when choosing a neobladder:

  • Must be able to adjust to scheduled voiding every 2-3 hours
  • Must be able to perform self-catheterization as needed to drain urine or mucous.  

Special Considerations with Continent Diversions

A continent diversion does not have muscles to expand or contract like a natural bladder, nor does it have nerve endings to alert you when it is full. These changes require the individual bear down and press on their belly to aid in emptying it and/or insert a catheter into the stoma or the urethra. Individuals must become very in-tune with their bodies as to when it is time to empty. In the beginning, most individuals must rely on alarms to remind them to empty their new bladder. After a period of time, many state that they get a “sense” that they need to empty.  

Individuals with continent urinary diversions have an increased risk for many complications, the most common being urinary tract infections. Metabolic problems can also occur as the “new” bladder absorbs urine byproducts such as ammonium, hydrogen and chloride. Other complications include pouchitis (inflammation of the pouch), pouch rupture, kidney infections, stomal stenosis (when the diameter of the stoma at the skin level narrows or constricts), urethral strictures, bladder stones, and B12 deficiency. The prostate is most always removed in radical cystectomy procedures making sexual performance a concern in men. Women may also experience painful intercourse.

One of the most difficult and emotionally challenging complications of these surgeries is the development of incontinence (urine leakage; the inability to control urine). This can happen either from the stoma or urethra. Those with continent pouch diversions can wear an ostomy pouch to contain the leakage. Those with neobladders may need to catheterize themselves on a regular basis or wear incontinence garments. Treatments vary and surgical interventions may be necessary.

Why would continent urinary diversion surgery not be considered?

Continent diversion surgery requires a patient to have a healthy bowel. They are also surgically challenging to create making it a lengthy OR procedure.  The following are reasons why a surgeon may not consider continent diversion surgery:

  • The intestine is diseased (i.e., inflammatory bowel disease)
  • Past history of multiple bowel surgeries
  • Overall general poor health
  • Treatment with pelvic radiation therapy
  • There is disease of the bladder neck and/or urethra (in cases of cancer for neobladder)
  • Poor working urinary sphincter (for neobladder)
  • Liver dysfunction
  • Kidney disease
  • Poor manual dexterity
  • Poor motivation to care for self

In conclusion

Those who choose continent diversion surgery can lead a happy and successful life without the need of wearing a pouching system.  However, one must be counseled prior to surgery of the work that goes along with daily life in managing the diversion and the possible complications that may result. Individuals should wear a Medic Alert bracelet at all times in the event of an emergency to alert caregivers.  Support is imperative to adapt to a new body, and new life, physically and emotionally. UOAA is here for you. Check out our helpful continent urostomy guide.

1Nayak, A. L., Cagiannos, I., Lavallée, L., Morash, C., Hickling, D., Mallick, R., & Breau, R. H. (2018). Urinary function following radical cystectomy and orthotopic neobladder urinary reconstruction. Canadian Urological Association Journal, 12(6), 181-6. https://doi.org/10.5489/cuaj.4877

Resource: The American Physical Therapy Association (www.apta.org) has information on therapists that specialize in working with pelvic floor muscles and incontinence.

When to Contact Your Stoma Care Nurse

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Your stoma care nurse has the specialized training to help you care for your ostomy and address any issues that arise. These professionals are also known as “WOC” (wound, ostomy, and continence) nurses. Stoma care nurses are there to help you make a smooth transition after surgery, and can give you the training you need to care for your ostomy at home. You should consider them your “go-to” resource for ostomy care education, consultation, and troubleshooting.

In honor of WOC Nurse Week, celebrated every year in mid-April, it is important to recognize the ongoing role that stoma care nurses can play in your ostomy care.

When to Contact Your Stoma Care Nurse

Not every ostomy care challenge warrants contacting your stoma care nurse, but certain issues are causes for concern and should be assessed by a trained professional. Connect with your stoma care nurse if you notice any of the following problems.

If you have a colostomy or ileostomy, call your ostomy care nurse if you notice:

  • Skin irritation
  • Recurrent leaks under your pouching system or skin barrier
  • Excessive bleeding of your stoma
  • Blood in your stool
  • A bulge in the skin around your stoma
  • Persistent diarrhea
  • Diarrhea with pain and/or vomiting
  • A stoma that appears to be getting longer

If you have a urostomy, call your ostomy care nurse if you notice:

  • Any sign of urinary tract infection
  • Skin irritation
  • Urine crystals on or around your stoma
  • Recurrent leaks under your pouching system or skin barrier
  • Warty, discolored skin around your stoma
  • Excessive bleeding of your stoma
  • Blood in your urine
  • A bulge in the skin around your stoma
  • A stoma that appears to be getting longer

Finding a Stoma Care Nurse and Showing Your Support

If you do not have a stoma care nurse, you can search to Find a Nurse using your state or zip code on the WOCN Society website. This feature is also accessible by clicking the “Resources” icon in the Peristomal Skin Assessment Guide for Consumers, a free, easy-to-use, digital tool designed to help teens and adults living with an ostomy identify common skin problems, provide next steps for care or management, and prompt when it is appropriate to seek support from a WOC nurse.

How Hollister Secure Start Services Can Help

Hollister Secure Start services offer free customized ostomy support for as long as you need it, regardless of the brand of products you use, including help using the Peristomal Skin Assessment Guide for Consumers. Call us at 1.888.808.7456.

 

Incredible WOC nurses make a daily impact in the lives of people living with an ostomy. Show your support for all they do during WOC Nurse Week (April 14-20, 2019) by sharing a story or photo on social media using the hashtag #WOClove.

 

The Peristomal Skin Assessment Guide for Consumers was funded through an educational grant from Hollister Incorporated.

The information provided herein is not medical advice and is not intended to substitute for the advice of your personal physician or other healthcare provider. This information should not be used to seek help in a medical emergency. If you experience a medical emergency, seek medical treatment in person immediately.

Editor’s note: This educational article is from one of our digital sponsors, Hollister Incorporated. Sponsor support along with donations from readers like you help to maintain our website and the free trusted resources of UOAA, a 501(c)(3) nonprofit organization.

Learning to Love Your Body – Stoma and All

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Following your ostomy surgery, you will no doubt have an adjustment period of figuring out your new routines and schedule. You will be learning about your appliance, how to use it, when to change it, and how it works. Although there may be frustrating and discouraging days, as you get the hang of your body and the newness of it all, you may also find yourself fascinated with your body’s adaptability. Some of the most resilient, inventive and strong people are ostomates who are changing the way people think by helping to reduce shame around ostomies as well as creating networks and communities to encourage and support others in similar situations.

Body Love

We live in a world where we are bombarded on a daily basis by media showing us advertisements of what beauty should be. The unreachable goals are already set, and then you throw in an ostomy? How in the world are we supposed to love our bodies when we feel so different? Building confidence begins with you. It begins with self-love and embracing your uniqueness. This can take time, and giving yourself the time to heal (both literally and figuratively) and come to terms with the changes and the new daily rhythms will go a long way in boosting your confidence. The great thing about confidence is that it is contagious. Others can feel it in the way you talk, walk, and are proud about yourself and your body, and when they sense it, it transforms the way they see you. This doesn’t mean that self-love is easy and immediate, but it does mean that it is a possible and attainable goal. One of the ways to lead yourself into recovery and learning to love your body is to get active. Maybe you love to run, swim, or hike in the mountains, or you’ve always wanted to join a gym but your disease was holding you back from the commitment of it. Have you always wanted to learn an instrument, or join a band? There are amazing people out there with stories of how they overcame their fears, and also how they discovered the right product for their unique lifestyle and activity.

Every body is different and being patient with yourself and your healing process is vital, especially within the first few months. While inspirational stories about others can help to normalize your situation, it is also completely normal to feel discouraged and down at times. If you are feeling extreme discouragement or hopelessness, don’t hesitate to reach out to a licensed therapist or a healthcare professional. It is important to be able to share as honestly as possible about your situation so that you can begin to move forward.

Inspirational Ostomates

If you are looking for some inspiration from fellow ostomates, there are many platforms out there with information to connect you with people and resources. Feeling like you need some encouragement in embracing your body and its changes? This video is full of helpful information as well as inspiring individuals just like you. As you begin to enter the world of other ostomates and hear their stories, not only will you be able to relate with them, you will also find that they are paving the way for others to be confident in their bodies and, in many cases, thankful for their ostomy and appliance. Maybe their stories will be the push you need to reclaim your life and find that confidence that you know you have in you. Don’t just stop there, why not become one of the inspirational stories that someone else undergoing a surgery leading to an ostomy can read about? Embrace your new life and body.

For More information, visit www.coloplast.us.

Editor’s note: This educational article is from one of our digital sponsors, Coloplast. Sponsor support along with donations from readers like you help to maintain our website and the free trusted resources of UOAA, a 501(c)(3) nonprofit organization.

On the Go Travel Tips

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Enjoy a trouble-free transit with these travel tips.

If you’re traveling by airplane, car, bus, train, or cruise ship, you might be stressed about your ostomy needs during the trip. Don’t worry. With a little preparation, everything can go smoothly.

It’s also a good idea to start with short trips away from home to build up your confidence. Once you’re reassured that your pouching system stays secure during normal day-to-day activities, you can start to venture farther.

Here are a few tips to help you be fully prepared and comfortable, no matter how you travel.

Luggage weight limits: Are you traveling by air with a lot of supplies? Check with your airline and your country’s federal travel agency (e.g., the Transportation Security Administration in the United States) for the luggage weight limit. Weigh the luggage before you go. It may be helpful to use a portable luggage scale. If you’re over the limit, check to see if your airline has a special allowance for medical supplies.

Forbidden items: The International Air Transport Association (IATA) forbids dangerous items on board airplanes. For example, ether, methylated spirits, or flammable aerosol adhesives and removers are considered fire hazards. Scissors also may not be allowed in carry-on luggage – check with your airline or pre-cut all of your skin barriers before traveling.

Pre-boarding security checks: At airports, your carry-on luggage will be inspected at the security baggage check before boarding. If you have medications, get a card from your healthcare professional that explains why you need them. Some countries do not allow certain medications, such as codeine, to cross their borders. A travel communications card from an ostomy association in your country may also be available. United Ostomy Associations of America (UOAA) offers a travel card to help you be ready for searches or checkpoint questions.

Using airplane toilets: During a long flight, there can be long lines for toilets, especially after meals. Be alert for a chance to use the toilet when most people are in their seats. It’s also a good idea to request a seat near a toilet.

Car travel: Your car seat belt should sit across your hip bone and pelvis, not your abdomen and stoma. If you want to give your stoma extra protection from the strap, you can buy a seat belt pad. You can also use an extension bracket to lower the angle of the belt across your body.

Cruising with a stoma: Are you worried about taking a river, lake, or ocean cruise? Don’t be. If you’ll be away from land for a few days or more, just pack double the supplies you need. Plus, follow these simple precautions and you’ll have a trouble-free voyage.

View or print the full PDF booklet Living with an Ostomy: Travel from Hollister.com.

For similar articles on traveling with an ostomy and other topics, visit the Hollister Ostomy Care Learning Center.

Editor’s note: This educational article is from one of our digital sponsors, Hollister Incorporated. Sponsor support along with donations from readers like you help to maintain our website and the free trusted resources of UOAA, a 501(c)(3) nonprofit organization.

You Can Always Learn Something New

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By Karin, Newbieostomy

Whether you’ve been a part of the ostomy community for 20+ years or joined it yesterday, United Ostomy Associations of America’s (UOAA) National Conference is worth attending. There are two main themes that come up time and time again when talking to people about their experiences at the conference: education and friendship. You can read about the bonds that are formed at the UOAA conference in the post Ostomy Camaraderie.

Regarding education, it doesn’t matter if you just got your ostomy or you’ve had it for years, there’s always something new to learn because technology advances and our bodies change over time. If you’re like me, you’ve scoured the internet looking for answers to all your questions and have probably found quite a few answers hopefully here on ostomy.org or on my blog newbieostomy.com, but you might still have some other questions that are left unanswered.

Queue UOAA’s National Conference. Held every two years UOAA does a fabulous job of bringing in professionals to share the most up-to-date research and information. At the last conference in Irvine, California they brought in doctors, surgeons, WOC nurses, nurses who also have an ostomy, a geneticist, a pharmacist, a psychologist, scientists, a dietician, TSA officials, and people with inspiring stories, and probably others that I’ve missed – all who are happy to answer your specific questions and share their knowledge. That’s quite a toolbox for us ostomates to have all in one place! Here is a tentative program of what to expect at the upcoming conference August 6-10, 2019 in Philadelphia, PA.

Conference attendees speaking directly to TSA agents about traveling with an ostomy.

This year there are even suggested sessions and reserved meeting space for people with similarities. There is a Young Adult Track (Discount if 25 and under), Pediatrics Track and a Caregivers Track, so feel free to bring your family or partner along as well.

“As a first-timer it was great, so much info.” – Eric, first-timer

I lean toward the studious side, so I brought a notepad and paper to every session I attended to help me soak up and remember as much knowledge as possible. In addition to (or in lieu of) taking notes during sessions, I’ve taken pictures of the slides I thought were really valuable.

Don’t want to draw attention to yourself with your hefty notebook or by holding your camera up every time there’s a new slide? Some speakers might also be willing to share their powerpoint presentations with you if you reach out to them after the event, or they might let you record the sessions if you get there early enough to ask permission.

“I have learned more in these few days than I have in the almost 6 years with my permanent ostomy.” – Daniel, first-timer

Wow. Right?

That’s pretty powerful.

With dozens of sessions offered, it’s can be hard to choose which one to go to if a couple of them conflict with each other. Luckily, each person has their own needs and interests so it’s likely that someone you know will go to a different session from you, which gives you both an opportunity to share what you’ve learned.

You might think that the sessions are only useful to a first timer, but not so. Derek has gone to every conference and has had his ostomy for almost 20 years, yet he still chooses to attend the “Basic Colostomy” session because there’s always something to learn and the other people who attend might ask a question he hasn’t thought of. While there are many repeat (basics) sessions offered every conference, the UOAA does a great job of bringing in new speakers to talk on different subjects as well. This year UOAA is also highlighting talks that will be of interest to both the new and experienced ostomate.

Like Derek, I also found value in the sessions from this conference even though I went to a ton of sessions at my first conference in 2015. I was happy to see new sessions offered, and to be able to attend a couple sessions that had conflicted with something else I’d prioritized hearing. I went to at least one repeat session that I noticed was really similar, but even there, I felt like I gained new knowledge and perspective because my brain can only hold so much information (even if we take notes).

In addition to attending the educational sessions and exploring the ostomy product exhibit hall, there was a hospitality area open every day where you could put a pushpin in the map of the United States to show where you’d come from, ask questions of local volunteers, and talk to members of the UOAA Advocacy and Communications team. There was also a free stoma clinic where attendees could sign up for an appointment to meet with a WOC nurse to troubleshoot pouching and skin troubles. On top of that, there were great speakers at the opening and closing ceremonies, and a really fun closing night party complete with dessert, dancing, and a perfectly executed fashion show.

This year the conference is at the Philadelphia 201 Hotel in the heart of the city and there are even more social events such as a free improv comedy show and music act, a Roaring 1920s Casino Night, and plenty of free time to explore an awesome city with new friends.